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  • Support the International NBIA Patient Registry and Biobank

    Support the International NBIA Patient Registry and Biobank

    The NBIA Alliance is asking for donations to the International Registry and Biobank during the month of March, while celebrating for the first time “NBIA Awareness Month” around the world.

    Learn More

  • March is NBIA Awareness Month

    March is NBIA Awareness Month

    Join the NBIA Alliance in declaring March "NBIA Awareness Month" around the world! Spread the word, share your story, raise awareness!

  • NBIA Collaborators Around The World

    NBIA Collaborators Around The World

    Explore this interactive mind map showcasing NBIA resources around the World, such as clinical centers, research organizations, pharmaceutical companies, patient organizations, online resources, and more.

    Explore & Learn

  • NBIA Alliance Patient Organzations map

    Patient Organizations

    The NBIA Alliance is made up of patient organizations from around the World. Please locate the organization nearest you.

    Find an Organization

  • Neurodegeneration with Brain Iron Accummulation

    Neurodegeneration with Brain Iron Accummulation

    This image shows the different types of NBIA disorders. Click on the button below to learn more about NBIA, types, symptoms, therapies, and more.

    Learn More

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Welcome to the NBIA Alliance Website!

The NBIA Alliance is now 10 members strong!

The Alliance is an international umbrella organization for NBIA lay advocacy groups. It started in January, 2012, in conjunction with the kick-off meeting of the European Union funded project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration).

As of June, 2019, we represent 10 countries with member organizations in Canada, France, Germany, Hungary, Italy, Netherlands, Poland, Spain, Switzerland and the United States.

Read More

International Patient Registry

The International NBIA Patient Registry and Biobank is a valuable resource created by the NBIA research community, and data and bio samples are available for research projects.

Learn More


Are you a clinician who is currently seeing an NBIA individual or has in the past? We would like to ask you to join an International Clinician Database for NBIA disorders. Are you interested in participating in our International Patient Registry?



Are you interested in NBIA research? Do you want to be informed when NBIA research grants are available? Would you like to participate in our International NBIA Patient Registry? Join our Researchers Database to be notified of the latest research news, where research is currently being done, and who is offering grants.


Interested Lay Advocates

Are you interested in starting an organization in your country for NBIA disorders? Would you like your organization to be a member of the world-wide Alliance working together to find a cure for all NBIA disorders? Do you want to learn more about how to go about achieving this goal?


NBIA Clinical Centers

NBIA Clinical Centers are institutions that are part of our research network and participating in our International Patient Registry. They are collecting natural history studies and other information on all NBIA disorders to further research and prepare for future clinical trials.

Find Centers

NBIA Genetic Testing Labs

A listing of known NBIA genetic testing laboratories around the world.

Find Labs